Family fight
Mother knows from personal experience the battle her daughter faces

by DANETTE DOOLEY
The Telegram

Roseanna Coffin knows too well how debilitating arthritis can be. But what hurts her even more than the pain she went through for years is the reality that her teenage daughter is also battling arthritis-related diseases.

"It breaks my heart now that I know Shawna has it, because I know what she's going through," Roseanna says, sitting next to the 15-year-old.

Roseanna was diagnosed with juvenile arthritis at around 16.

"I had massive swelling in my feet so bad that I had to wear shoes three sizes bigger. And my hands swelled up so much I couldn't feed myself," she recalled.

At 22, she was diagnosed with a form of arthritis that affects the spine called ankylosing spondylitis.

After living on Fogo Island for almost two decades, she and her husband and two children moved to the Flatrock area to be closer to medical specialists.

Fortunately, her arthritis is in remission.

Now, she's helping Shawna cope with multiple connective tissue diseases.

Roseanna says she and Shawna draw much support from the Arthritis Society, and it would be great if they could offer sessions for young people with the disease.

"I feel it is important for people like Shawna to have others they can talk to who can relate to what they're going through," she said. "And there is power in taking charge of things that you can do for yourself."

Shawna has missed most of this school year. Every second day she has to see a specialist, every week she has to have blood work, and she's had to learn to give herself injections.

Roseanna says Shawna has lost her hair and her facial features are changing, but she never complains and does her best to smile through it all.

"I can't tell you how proud I am of her," Roseanna says.

In a recent speech at her school, Holy Trinity in Torbay, Shawna told her classmates how she has been diagnosed with dermatomyositis, lupus and psoriatic arthritis.

Her speech focused on what has, thus far, been the most devastating of the diseases.

Dermatomyositis causes a skin rash, severe muscle pain and weakness. The Arthritis Society describes it as a disease that causes the body's immune system to stop working, leaving people unable to fight off germs and disease. It also causes the body's immune system to attack healthy tissues, including the kidneys, heart, liver and other vital organs.

Shawna said it can make someone her age feel totally alone and
misunderstood. She said things that others take for granted, like going to
school, can become a problem because the person is scared about what people
might think of them as dermatomyositis causes their appearance to change.

"They worry about losing their friends by thinking their friends will not feel the same about them anymore, having to deal with everyone around them talking about you and your disease and what they think is wrong with you," she said.

Shawna said she's grateful for the support she gets from her family and Dr. Paul Dancey.

"Often, people with dermatomyositis become depressed and suicidal," she said in her speech. "But like some other people with this disease, I somehow find the ability to stay strong through all this, but it's not always easy for me."

The Arthritis Society of Newfoundland and Labrador stresses that arthritis is not just a disease that affects older people. Recent data suggests that as many as one in 250 children and youth deal with arthritis on a daily basis.

Throughout Canada, the Arthritis Society is involved in a variety of initiatives, including the Grade 5 Healthy Joints program that's offered in this province and educates students on arthritis prevention and management and provides ergonomic backpacks to children with juvenile arthritis.

Local students also take part in the society's Go Blue campaign, which raises awareness of juvenile arthritis.

Shawna, meanwhile, said spending more than a month receiving treatment on the cancer unit at the Janeway Hospital helped her put her condition in perspective.

"Even though I have many serious problems myself, I just couldn't help
feeling bad for the other kids," she said.

"I always think to myself, there is someone out there that has it worse than me."

Mother and child with arthritis

By Karen Meyer - abc

Arthritis is a painful inflammation of the joints that affects both children and adults. It can also affect several members of the immediate family. ABC7'S Karen Meyer has the story of a mother and her 2-year-old daughter who are living with arthritis.

Being a young mom with active young children is a mixer of fun and work. But when you are in pain it's not so easy. Twenty-seven-year-old Lydia Hernandez and her husband Wilson have two beautiful girls, Angie and Lynette.

. Lydia and Lynette have JRA, juvenile rheumatoid arthritis. Lydia was diagnosed with arthritis at the age of 3.

"I began to develop fevers. My parents didn't know why I was getting these high fevers. No other symptoms, just the fevers, then I started to develop rash and they found out that it was JRA," said Lydia.

At the age of 10 months, Lynette started developing fevers.
"I didn't jump into conclusions because my first born was good, then the fevers continued. At first we though it was because of an earache, she had an ear infection," said Lydia.

Shortly after that, she was diagnosed with JRA.

Lydia struggles to be the "perfect" mom , but she can't be that at times.

"If my hands are hurting, or being able to take a walk with my girls, or going out anywhere to enjoy the day. If I go out and it's cold or if it's raining and I'm in pain I really can't enjoy myself and I pretty much have to be at home during the winter, it's hard. I can't sign my daughters sometimes for their swimming classes," Lydia said.

Five-year-old Angie understands when her mom is in pain.

"I help her get her medicine when her hands are hurting, I take care of my little sister when my mom needs to lay in my bed and that's really all," Angie said.

And Lynette knows what to do when she is in pain. "I tell mommy and daddy," she said.

Jaime Scherer, staffperson from Chicago's Arthritis Foundation, says parents who have arthritis often feel segregated from other parents.

"That, you know, they can't just do, like Lydia said, she can't do normal things, she can't go for walks with her daughters or go to the grocery store some days because she hurts so bad some days people can't even get out of bed," Scherer said.

Support and public awareness about arthritis is just as important as research. This is why Angie plans to become a doctor.
"I wanna help people get not sick where other people could not get sick," said Angie.

Diagnosis, early treatment key for juvenile arthritis

Gillian Shaw, Vancouver Sun
Published: Wednesday, December 12, 2007

When Cassie Porte was born almost three years ago she was a happy, healthy baby.

That lasted until she was 20 months old, when all of a sudden one morning she couldn't walk.

"We picked her up out of her crib and she couldn't walk -- her knee was bending and collapsing under her," said her father, David Porte. "We went to the emergency department, they took X-rays; they thought something was wrong with the knee, that she had injured it.

"Then they thought maybe it was a virus or an infection."

When all that was ruled out the diagnosis came as a shock.

It was juvenile arthritis, a painful auto-immune disease that Porte and his wife, Dr. Debbie Setton, who is an anesthesiologist, expected to see in older people -- not in their toddler.

"When they said it was arthritis, I didn't think it was possible," Porte said. "We never would have imagined that -- she's two years old, not 102.

"I thought, 'there is something wrong here.' This is not something people associate with children and nor did we. We know older people get arthritis but with kids it is an unknown thing."

Unknown perhaps but not that unusual.

Pamela Clarke, vice-president of development for the Arthritis Society, BC and Yukon, said one in 1,000 children under the age of 16 has the disease in Canada.

"It is a very common chronic childhood condition," she said. "In every elementary school in the province, statistically there would be at least one child with arthritis and it is even higher with first nations populations."

It masquerades as other ailments, a factor that can delay diagnosis and treatment.

"If it is diagnosed accurately and treated very quickly within a three-month window the prognosis for the child is very good," Clarke said. "It gives them the best chance of going into remission."

Clarke knows from firsthand experience.

Her daughter, now 13, was diagnosed two years ago and Clarke attributes an early diagnosis to her successful treatment and current remission.

Like Cassie, the onset was sudden and unexpected.

"I was putting sunscreen on her and her knee started to swell," said Clarke. "She hadn't done anything and her knee swelled to the size of a cantaloupe right in front of me in a matter of minutes."

Her daughter spent a month in a cast but when the cast came off, the knee was still swollen. A referral to a pediatrician and a battery of tests ended with the diagnosis and treatment.

"I firmly believe she went into remission so quickly because she was treated so quickly," Clarke said.

The pediatrician who ordered the tests phoned Dr. Ross Petty, professor emeritus at the University of B.C., a renowned world expert in pediatric rheumatology and the doctor who is consulted on most of the childhood cases here, Clarke said.

His work has spurred a campaign to endow the Dr. Ross Petty chair in rheumatology, a $3.5 million initiative that so far has raised $500,000 in a contribution from UBC, another $250,000 from the Arthritis Society and $40,000 from Cassie and Friends Fund for Children with Juvenile Arthritis.

Cassie and Friends had its start when Porte canvassed donors to support him in a fundraising run for the disease that his daughter was suffering from.

"When we started on our journey with this and we started on fundraising around the run, I realized I could do something," he said. The run was the Scotiabank Charity Challenge in June of this year. Porte decided to do the five-kilometre option and in the coming year he plans to up that to the half marathon.

"I sent an e-mail to friends and family and I figured we'd raise a couple of thousand and we'd match all the donations," Porte said. "When I woke up the next morning already $1,500 had been pledged and people kept giving and giving and giving.

"I went out to lunch with one guy I know and he said, 'tell me about your run and your daughter.' He said, 'I want to do something,' and he gave me a cheque for $1,000."

The generosity of people who heard of Cassie's story and that of other children suffering from a disease most often regarded as an older person's ailment spurred the creation of the Cassie and Friends Fund that was officially formalized under the Arthritis Society earlier this month.

As Clarke recalls, that was thanks to the persistence of Porte's mother and his aunts.

"It was pouring rain during the run and I was standing under a tent with David's mother and his two aunts," Clarke said. "They said, 'you need to form a fund, you need to do that now.

"'You should call it Cassie and Friends and that was the birth of it."

The disease affects some 5,000 children in B.C. and Clarke said even small contributions could add up quickly to see the UBC chair fully endowed.

"If each of those families contributed a dollar a day, we'd be well on our way to achieving this chair," she said.

Cassie's seven-year-old brother Benjamin is doing his part. After Halloween, he and neighbouring five-year-old twins set up a candy sale on the street. He phoned his father to proudly report the day's take.

"He said, 'guess how much we made?" Porte started guessing at $3 and was amazed when his son announced the total was $36.

From Porte's experience, the help comes not just from extended families but from friends, business associates and even acquaintances who are touched by the suffering of children experiencing the pain of the disease.

The diagnosis has been hard on Cassie and her family and the struggle to find a medication that will put the disease into remission continues. It started with her knee and has spread to her ankles and her fingers. She has been on steroid injections, with one in her knee and four in her ankle with injections every week. This all comes as the family is touched by the generosity of the people contributing to Cassie and Friends.

Porte said her fingers are too small for the injections. "It has been terrible and amazing at the same time, this journey," she said.

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